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We offer our most sincere condolences to Old Man who lost his wife of 59 years on Monday night to Pancreatic Cancer.   
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Author Topic: Wife of suspected Peyronie's PT with complicated medical history  (Read 593 times)

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TheBoykinLady

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First- I would like to thank all of you that have made this amazing resource available. I have been lurking as a guest for a while and you've all been a tremendous help.  Hawk, your journal was amazing. Thank you!

My husband and I have been married for 16 years, both 48 yo, and in the last 6 months he has developed 2 significant curves on the shaft of his penis. Sex has become impossible since the second curve appeared. He was tentatively dx'd with Peyronie's by our PCP and referred to Urology. Covid has made a typical appointment nearly impossible, even in Florida. We have a urology appointment scheduled for April 7th and it can't get here fast enough. He has been anxiously awaiting, all while the curves are worsening and he is rapidly losing size. I feel so bad for him right now.
 
He has a solid hx of premature ejaculation and not being able to sustain an erection before the Peyronie's showed up. Viagra, Cailis, and herbal supplements made sex possible, to a certain degree, but never satisfying for either of us, like it was when we were in our 20's and 30's. In early 2020, the meds stopped helping.
There are things that will complicate his case and treatment plan. We are both in the medical field and have done the research on the drugs and treatment options but are awaiting physician input to confirm. As of right now his line of thinking is going straight to an implant due to the degree of his curves and potential complications with injections. I have encouraged him to go with whatever treatment he thinks will work best and we will get through it together.

He is a congenital hemophilliac and has had multiple inguinal hernia repairs, since age 3, with the last including mesh implant. 
We have insurance through his employer at the hospital and they tend to follow Medicare guidelines. Any treatment will have to be signed off on by his hemotologist first.
All of the waiting is really bothering him. He views it as "a day not addressing the problems is a day he is losing size and function". His words exactly.

I have many questions but I will begin with these and hope for some replies.
1. Does anyone here have hemophillia and has undergone treatment and/or implant and what was your experience?
2. Does anyone have advice for a wife trying to support her husband during this obviously heinous condition and excruciating waiting game?
3. Has anyone undergone treatment and/or implant after inguinal hernia repair and what was your experience?
Many thanks again to all of you!
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48yo wife of Erectile Dysfunction and Peyronie's patient with hemophilia (waveboy).
I'm looking for answers but am happy to answer any questions you may have.

Mikel7

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Re: Wife of suspected Pyeronie's PT with complicated medical history
« Reply #1 on: March 31, 2021, 01:00:50 PM »

Welcome BoykinLady!  It sounds like you have read the survival guide, if not it is our guide to every newcommer to the forum that answers lots of questions. -------> https://www.peyroniesforum.net/index.php/topic,3180.msg44057.html#msg44057 . I think it is awesome that you are supporting your husband in this matter as for a man it can be very devastating.  Hawk is the creator and overseer of this forum. You won't find another forum like it anywhere. I can say that I do not have an implant, but I have had 2 separate hernia repairs on both right and left side with double lined mesh. I am steel belted completely down there.  I have always wondered if this would complicate things if a future implant was implemented.  I can say from experience that my wife has been very supportive and we communicate about every little detail pertaining to peyronies.  Your husband may benefit here also if he got involved in the discussions surrounding this terrible disease. We are all here to help each other.  Good success :) Mike
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Lump April 2020, age 61 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.

TheBoykinLady

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Re: Wife of suspected Pyeronie's PT with complicated medical history
« Reply #2 on: March 31, 2021, 01:07:33 PM »

Thank you for the reply! My husband is still lurking and reading. Given his hospital and on call schedule, he doesn't have much time. We do talk each night and review what I have learned from the forum each evening. He is currently on Hawk's entry day 18, I believe.
He calls his mesh his screen door :D Have you ever wondered if the mesh or trauma to the inguinal ring played a part in your Pyeronies your diagnosis? We were discussing this last night, as well as which surgical approach for an implant.
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48yo wife of Erectile Dysfunction and Peyronie's patient with hemophilia (waveboy).
I'm looking for answers but am happy to answer any questions you may have.

Hawk

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Re: Wife of suspected Pyeronie's PT with complicated medical history
« Reply #3 on: March 31, 2021, 01:26:34 PM »

Welcome to the forum TheBoykinLady,

we are so glad you found us, and few things make us as happy as seeing a wife who takes an active role in what is clearly a couple's problem.

If by any chance you have missed the Survival Guide, it is a must-read.  It is an information-dense document that should be read more than once.

----------->https://www.peyroniesforum.net/index.php/topic,3180.0.html1

1. I took time to search the forum for hemophilia and hemophiliac .  While there are a dozen or so sich posts, they all deal with Xiaflex injections and a couple of other issues.  None deal with surgery or implant.

3. We have one member who had hernia surgery AFTER his implant, and the surgeon damaged his reservoir, requiring a revision implant.  Several of us have had prior abdominal surgeries before our implants, but I am not certain about an inguinal hernia.  My guess is it would not be a big challenge for a skilled, high-volume surgeon.

2.  I can count. I just saved this for last.-  The fact that you are here says you already intuitively know much of the answer to that question.  It is difficult to generalize because of the range in relationships and personalities.  Your husband might be proactive, withdrawn, or angry.  You could have a strong relationship that has weathered a lot of adversity or have been on the brink of divorce before this hit.

Generally, let him know this can be a time of relaxing adventure.  The two of you can see what works almost like an experiment without the pressure to perform. 

This is difficult to verbalize, but before my implant, 1 day lives vividly in my mind.  When I thought my wife was "into our love-making," I was hesitant to try an unproven move or activity because it might break her momentum, especially if it did not work.  One day I walked up and told her I was going to have sex, but she was not :)  I explained I wanted her to be like an artificial love doll or a call-girl.  If she got into it sex, it would put pressure on me to think of her rather than figuring out what worked and what didn't.  It was GREAT to try different positions and techniques and evaluate things without a worry about "producing results for her."  I/we learned a lot.  My head stayed clear enough from the fog of ecstasy and responsibility that I could think as I experimented. An you into it I let her out of her promise, and it ended great for both of us.

That is just one example of what was supportive to me.  There are many other things for many other people and situations.  The confidence of knowing you view this as a mutual challenge and not just his problem will probably help.  Open honest communication, some time to have fun that does not involve sex, a quick (not sexy) hug and telling him you love him, and maybe a toy-kit IF both of you are so inclined.  Much depends on how comfortable he is with all of this.

Hawk
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

TheBoykinLady

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Re: Wife of suspected Peyronie's PT with complicated medical history
« Reply #4 on: March 31, 2021, 01:44:34 PM »

Thanks Hawk. I read the Survival guide aloud to my Hubs while cooking and having dinner one evening. We have, over the years, learned to be intimate without actually having sex so that is not an issue for us, thankfully. MY membership here is more research based and learning to support him through the frustration of dealing with physicians(wait times), psych effects of Peyronie's, and managing his co-morbidities. He is a very proactive man and will join the forum when he is off of this call rotation next week. I am sure he will be excited to post the urology visit notes. I did search the same topics and found little also but thanks for trying. I am reading and learning as much as I can but I have to say, I hit the jackpot here. Thank you for all of your efforts.
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48yo wife of Erectile Dysfunction and Peyronie's patient with hemophilia (waveboy).
I'm looking for answers but am happy to answer any questions you may have.

Mikel7

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Re: Wife of suspected Pyeronie's PT with complicated medical history
« Reply #5 on: March 31, 2021, 02:14:59 PM »

. :D Have you ever wondered if the mesh or trauma to the inguinal ring played a part in your Pyeronies your diagnosis? We were discussing this last night, as well as which surgical approach for an implant.

 This conversation did come up with my Dr as to what  "could have " played a role in the development of the disease. He noticed that I do have notable scar tissue build up around the sutured areas from the repair. This is all conjecture though.  :)  Mike
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Lump April 2020, age 61 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.

Stabler

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Re: Wife of suspected Peyronie's PT with complicated medical history
« Reply #6 on: March 31, 2021, 04:09:02 PM »

Hello and welcome to the forum.

I just sent you a PM with some helpful information. You will find the forum to be very resourceful and all our members are very helpful.

Stabler
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Moderator since 2015- Missouri- I work in the medical field and have strong knowledge of insurance and how to obtain coverage for medication and other treatments. Being a woman I do not have Peyronies but you can ask me anything. I am happy to help.

Hawk

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Re: Wife of suspected Peyronie's PT with complicated medical history
« Reply #7 on: March 31, 2021, 07:16:37 PM »

Applying what I have learned in the past 16 years, I I had both Erectile Dysfunction and Peyronies Disease at age 48, this is what I would do.

I would start with non-invasive means:
I would start VED and Traction to prevent a further loss of size.  I would hope for some possible reversal and maybe even some improvement in erections. (if not contraindicated with hemophilia.
I would take all of the recommended supplements
I would try to get a Pentox prescription
I would investigate possible hyperbaric O2 therapy
I would throw in some heat therapy

All of these things show some promise in some individuals.  None of them are likely damaging to his penis or his general health. Approaching from all angles has some chance of success.
I would simultaneously be considering the very top implant surgeon you can access.  By the time you settle on a surgeon and book an appointment, you will know if the non-invasive methods improved things to a level of acceptability.  If not, I would continue them as I proceeded to schedule surgery.

The likelihood that non-evasive means will correct bot Peyronies Disease and Erectile Dysfunction enough to make sex satisfying is not great, but it is possible.  If it doesn't, then nothing but a properly installed inflatable implant is going to fix it all.  The good part is that it can be done with one outpatient surgery with the potential to have intercourse within 3 weeks of surgery.

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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums
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